Wednesday, February 28, 2007

Yep, the best disability website I've ever visited would have to be OUCH ... the BBC site that can be found at www.bbc.co.uk/ouch/ . It's a site I drop in regularly as I did today during a break at work. They had a feature that, oddly because I thought I'd read the whole site, I'd not noticed.

They do a top ten list in a semi (mostly) humourous and a semi (lesser) serious way. All on issues about having a disability or being disabled in a nondisabled world. I loved it. I immediately thought of lists I'd like to write.

For the rest of the day I've had a pad and pen with me. First thing I found out, it's harder to write a 'top ten' list than you'd think. But finally by nine tonight I had a list.

TOP TEN WAYS IT'S COOL TO BE IN DIRECT CARE

10: Everyone thinks you are sooooo patient and sooooo special.

9: You get to set goals for others that you can't reach yourself. Way Cool.

8: Every day is different ... some are even terrifying.

7: After a week you can eat a peanut butter sandwich while wiping someone's butt.

6: A 6 figure income, if you consider the .00 as two figures.

5: Getting really down deep excited when someone buttons their shirt up right.

4: Going to the movies, in the afternoon, on work time.

3: Being trusted to get it right with someone elses life when you get it wrong in your own.

Tuesday, February 27, 2007

For two weeks I've been working on a training booklet on the subject of abuse. Physical, sexual, emotional, financial, spiritual, abuse along with neglect and exploitation. I've defined the terms. Given examples - examples that haven't been hard to come up with. I've been writing to an outline set by others - an outline that asked my to explain why people with disabilities are more vulnerable, easier to hurt. I've tried to write this clearly and plainly, I've tried to embue my words with information but also outrage. It hasn't been easy.

I remember too many faces. Of the guy, straight as an arrow, who I worked with. Thought he was the greatest. Thought he was one of the ones with pure heart and right intent. Then of the face of the guy who reported being sexually abused by this friend, the staff. I had liked him. Had lunch with him. Didn't know. I feel fraudulent writing this booklet.

I remember faces. The cool staff, hippy-haired big faced woman. The kind that you looked up to in high school for her wild ideals and her slightly outsider status. I liked having tea with her after the consultation. She spoke so well about her reasons for being there. She didn't tell me that she was dipping into her client's finances. No, that didn't come up over tea. But I remember her face. And his, they guy defrauded who didn't understand about lost money but was hurt by the loss of her. I didn't know. I feel fraudulent even writing this post.

I remember faces. The big guy, big like me. Losing it a punching a woman right in the face. I wasn't in that day. Came in to find him gone. She was fearful for weeks he'd come back. I'd gone for beer with him. He never told me he was at the edge. He never asked for help to step back. He just bought a round and we laughed. I didn't know. I feel fraudulent.

I remember being asked to measure a bruise and draw it's dimentions to ensure the report was accurate. And I type word after word into a booklet that seems somehow to drag me down.

I want to paint abusers all orange. So that we can see them. So that they are noticable. I don't want to just write a booklet, I want science to discover the gene that causes people to hurt other people ... I want them weeded out. Give me Down Syndrome, Spina Bifida, Williams ... any day. We could use a little less greed and a little more decency. How about it gene hunters - how about looking for the cold hearted bastard gene - that's the one you need to go for - leave the disabled alone go for the traits that truly bring misery.

I'm ranting.

I know.

I shouldn't use the blog this way. To just yell.

But I've worked on that book all evening.

Making sure the comma fits between words that shouldn't be put together in the first place, like abuse and trust.

My mind tells my heart that the book will make a difference and people will be safer.

Monday, February 26, 2007

When I was in Thunder Bay giving a lecture at the conference on autism there, I met a wack of students from Lakehead College all getting there DSW (developmental service worker) diploma. They were so incredibly young.

And idealistic.

And energetic.

And hopeful.

They had exactly what the human service system needs - ideals. I talked to many of them and was impressed by their pragmatic understanding of what it meant to work in human services, they had just the right amount of cynicism mixed with the drop of passion that's necessary to get through the tough times.

When I talked with them they had actual ideas for what needed to change and where we, as a system, were missing the point. They spoke respectfully about their jobs and where they worked. They sold me tickets to a raffle and promised to give me my prize if I won. Wink.

So many times I've seen people driven out of this field, no longer able to take bureaucratic misfires, political decisions and harsh supervision. Good people. All who leave never complaining about the difficulty of serving people with disabilities but exhausted with serving the system.

I wish for these kids ... they don't know they're kids ... the spirit of forgiveness and the ability to use it when we mess up, the spirit of courage and the ability to stand up to us when we mess up, the spirit of laughter and the ability to laugh it off when we mess up. Because mess up we will. Often. Over big things and small things. We'll make the mess and give you the mop. But you're young, you can do it.

Sunday, February 25, 2007

"The noise, noise, NOISE ..." I said to Joe who immediately got the reference. The Science Center had a Superhero exhibit and there were pictures of Marvel Superheros everywhere. But even more there were kids. Thousands of kids. Screaming. Crying. Whining. Yelling. Laughing. Kids. Suddenly I realized that Ontarians are having way more sex that I had ever thought.

We were both tired. But we bravely carried on. We looked at exhibits, tried out the activity centers, and got a kick out of watching Joseph have so much fun. He's just shy of his teen years and is growing into a really good human being. Ruby, his new sister, fussed a bit but her eyes were caught by all the colours, sounds and activities. After staring at a fantastical world she fell sound asleep.

I pulled the wheelchair up to a series of picnic style tables that were set up for kids to colour and make their own comic books. Adults had taken over one end and most sat staring into space picturing the days before children no doubt. A little boy, only slightly out of infancy, slipped off the bench and fell to the floor. The child, amazingly, did not cry. He just looked a trifle confused as he looked from under the table out to the world.

To my right a blurr of activity and a young man raced towards the fallen child. Everyone stopped. For a moment the room seemed almost silent. We all saw, at once, that the rescuer had Down Syndrome. His eyes were intent on the child and his hands reached out. Horror was all over the faces of everyone.

Everyone.

Including me.

I know that God gave many people with Down Syndrome a hole in their heart so that excess love has a means of escape. I know that they have a capacity for such deep kindness. I have been a recipient of their gentleness.

But, still, horror froze my face.

Mom suddenly noticed her babe under the table and before the young man with Down Syndrome could reach the boy she intervened and picked him up. The guy with Down Syndrome screeched to a halt and looked up. He saw everyone look at him. He was with another young fellow, I never saw anyone else with them but I doubt they were alone. He sat down on the bench and said, "I was just going to help."

God bless him. His heart. His willingness to intervene when all of us stood and watched.

But please, God, let someone teach him to stand back. To not rush in. That men do not reach out and touch, in any way, children they do not know. The child was not in danger. Not crying. Not needing any real help.

But he, the young man with Down Syndrome, needs help. He needs to understand that people already have a prejudice about those with intellectual disabilities.

"I don't want THEM moving in to the neighbourhood, I fear for the safety of my children."

You know what that means.

So do I.

His intent, I'm sure was pure. But in the eyes of those watching, their fears were confirmed. It's prejudice. It's wrong. It shouldn't be. But it is. And because it is he needs to learn some difficult lessons. But they are lessons we've all learned.

Teach him how to stand by.

Like we all did.

Teach him the ways of social coldness.

Like we all are.

Teach him to bind up his heart.

Like we all do.

The world is dangerous when you are different.

The world judges you when you are different.

The world is not safe on so many different levels.

Forgive me. I know that many will want me to say that he doesn't need to change, the world does. And of course I agree.

Saturday, February 24, 2007

There are three computer terminals at the business center in this hotel. Right now I am seated at the one on the far left, right by the wall. I've always liked being with my back to the wall - that way danger can come in only one direction. I glance at the computer stand right next to me. Smile. It was a good night last night.

I checked in late and stopped by to check to see if anyone had posted comments on my blog posts. Nope. Then checked email. None. Feeling rejected by the web I was about to leave. Just then a woman and teen son entered the business center. This is one that is privately run and you have to check in, pay and have the clerk log you on. As she was busily paying for her son she said, "I'm coming back in a half hour. Don't go anywhere else. Do you understand?"

Even teens with disabilities can be embarrassed by their moms. He rolled his eyes. She looked at him with a look that's said, "we've been through this before young man and I really mean it this time." Then she looked at me and an odd expression crossed her face. I didn't think much of it, I get odd expressions often.

She left and the clerk signed him on to the computer one station away. The clerk asked his name, he answered swiftly, "I don't tell strangers my name." The clerk looked offended but I was kind of pleased.

Then the nameless one looked at me, "And you are a stranger too so don't talk to me cause if you do I'll tell my mom."

I nodded and said, "That's enough to scare me."

He burst out laughing. So did I. Even so, he did what he needed on the computer and got him self going.

"Mom told me that I had to know three things about someone before they could be trusted." He looked back at the clerk who was listening in, "And I don't know anything about you guys so you can't be my friend and you can't be trusted."

That was that.

I decided to check out a few things for tomorrow. We're going to the 'superhero' exhibit at the Science Center tomorrow and I thought maybe we'd do a movie afterwards. We haven't seen wonder-kid Joseph for awhile, want tomorrow to be fun. I can fritter time away on the computer with the greatest of ease.

It seemed only seconds later when mom was back and he was finishing up his game on the computer. She asked him to step outside for a second and then she took the seat next to me.

"You are Dave Hingsburger, right?"

I said, "Yes," a little surprised but now understanding the look she'd given me. It was recognition.

"How did he do?"

"Pardon?"

"My son, how did he do?"

I understood her question immediately. I told her that he was quick to keep us all at a distance and that even though he thought my comment funny he didn't talk to me. I told her that I was amazed because most people I know with William's syndrome really can't stop talking given the slightest opportuntity.

She asked what I had said that was so funny. I blushed. I can you know. I told her that I'd made a joke about how scary she was.

She smiled and said, "I have to be scary sometimes. It's part of being mom."

Then she told me that she saw me speak when her son was just a baby. (A baby! He's almost a full grown man now. God, how old am I?") And she was determined that her boy would not be someone's victim, someone's statistic. She taught him from the time he could talk to not talk to strangers, not give out information and to tell her if anyone tried to break her rules.

I told her that I was impressed. She'd done a good job.

She thanked me for my work, for my book Just Say Know and for giving her ideas about how to keep her son safe. I almost cried.

As she left the room I heard her son say, "Mom, he's a stranger and you talked to him. You don't even know what kind of ice cream he likes."

Friday, February 23, 2007

For awhile I thought that my trip to Thunder Bay would be cancelled. But we managed to make our way through the snow, into the clouds and finally into sun. The flight was packed went without incident.

In the terminal my chair just died. The front wheel wasn't rolling anymore. It was tough. We finally got a rental car and went straight to a wheelchair repair place. At first I thought I might just buy a new chair. I'd been planning to anyways. When I asked about chairs, one of the staff, asked, loudly in a crowded store, about my finances and about being assessed for benefits. I know that I could get benefits but I needed the chair now. But I was stunned. Everyone looked at me, clearly waiting for me to answer.

Um, isn't that a little private?

Um, isn't that no one's business?

Why would it be ok for her to ask questions from a stranger that she'd not tell her friends. I was repulsed.

They fixed the chair, but only after I told them my name. Why did they need to know my name in order to fix the chair? When did my life become public in this manner.

On the way back to the hotel where the conference was held I saw a strip bar called 'private i's' that had gone out of business.

Well my 'I' is just fine and I refuse to have my privacy stripped away.

And I won't ever do that kind of thing to someone with a disability ever again.

Thursday, February 22, 2007

We were waiting for the elevator. A small crowd had gathered and it was ... um ... diverse. It was an institution for people with mental illnesses and as such it was an 'interesting' crowd. One of the men waiting for the elevator fooled me. I thought he was some kind of a construction worker. He had on dusty workboots tied like day labourers tie them, jeans worn out by work not by gimmick, a work undershirt and a red check flannel shirt.

It was drag. Good drag, but drag.

We got on the elevator and it was crowded. He stood by the buttons just to my left and back a bit. I could hear him talk, joking to himself, must have been because no one else seemed to notice him at all. "Second floor, social sexual, you gotta smile and be polite if you are going to get out." Then he giggled.

Saying it once wasn't enough.

"You gotta smile and be polite if you are going to get out."

The door openned and he disappeared. It was only then that I noticed a very big man right in front of me. He looked like he could take us out easily, like to him Dirty Harry was a sissy. I thought to myself, "OK, big fella, you gotta smile and be polite if I am going to get out." He didn't catch my thoughts but he did move out of the way quickly and easily in that dainty way that large people often have of moving.

On the way out I was thinking about the workman-inmate guy. At first I thought, mockingly, about the simple solutions we teach people to deal with complex issues, complex lives. But then I thought that there was a kind of wisdom in those words.

Yeah, life's tough. But you gotta smile and be polite if you are going to get out.

He may have been 'crazy' in the eyes of the world, he may have been in there for some serious stuff, he may have had hours of therapy, but he's gonna be ok because he's got it figured. If the manages those two things he could end up in a job, in a relationship, in heaven. Man, that's the ticket.

You know it's been a hard few days for me. But I haven't tried to let people know about it. I just whined on my blog yesterday and let it out. That's it. For the rest of the time, I just tried to smile and be polite and got out when I could.

It works.

So next time someone with a disability asks me how to manage, I'm going to say .. Ya gotta smile and be polite ... 'cause it actually works.

Wednesday, February 21, 2007

How come back then I looked at adulthood as a piece of cake. Something to rush into. Why did they lie to me? Why did they tell me that when I grew up I'd have power and control? Be the master of my own destiny.

They didn't tell me that life was hard.

Really really hard.

They didn't tell me that life came at you fast.

That it's easy to lose balance.

It happened when I got home on Sunday. Checking the messages on the machine.

Wham!

I should have seen it coming. You know how when things are going a little too well, you gotta be careful, watch for the catch.

Well the catch caught me.

One phone call and it all came back.

A sense of inadequacy.

A realization that life's tasks will always be just a wee bit beyond me.

That it's possible for a fat man to bite off more than he can chew.

Damn.

Has this happened to you? Suddenly out of nowhere, when least expected, life throws you a curve and you feel just plain overwhelmed and under prepared? You wish you could climb under a blanket and hide from the world? You long for the days when you were filled with actual down deep hope?

Tuesday, February 20, 2007

I was just about to give a half day lecture and she was sitting up front. As a deaf woman she needed to be able to see the interpreters who were going to get a workout translating my rapid talk into sign. She spoke well and clearly, though she had the 'accent' of a deaf person speaking. Right off, upon seeing me, she was in her element. She came up and talked about going to conferences about disability and being the only one there with one. Here she was at a conference and the speaker was in a chair.

"About time," she said.

We talked a couple of times during breaks and I liked her politics and I liked her.

She told me of being at a conference, I believe in New York state, where her interpreter had said how nice it was to sign for a 'high functioning deaf person'. She shot back that it would be nice to meet a high functioning hearing person. I laughed. I got it. She liked that I got it.

It was great watching her during my lecture. The signers were good and kept up almost word for word with me. She smiled at all the right places, got the jokes that went over the heads of many in the audience and most importantly she laughed - out loud - a couple of times.

I was reminded of seeing the movie Smoke Signals when it openned in Toronto. It was a movie with an all Native Canadian cast. It's very very funny. We were there in the audience of primarily Native Canadians. A couple of times they laughed at things we did not get. Even in the dark I caught them glancing at each other in recognition of something on the screen. They knew when it was real.

So did she.

It was a kind of validation.

And it felt good.

For a second I understood something new. I've written here a lot about disability and isolation about the prejudice and disphobia of the 'typical' community. In my mind I have always equated disability and difference in general with 'outsider' status. But in that moment that we connected as two disabled amongst the 'many' I understood that the 'outsider' is determined only by who draws the circle.

It is entirely possible for 'us' to draw the circle and for you to become 'them'. I should have got this a long time ago. I remember a guy with a disability who, when talking about staff said to me 'Your people's problem ...' He understood that there was a 'them' and 'us'. But I didn't really get it because and only because I considered him 'them' and me 'us'.

But the shoe is on the other foot.

I am 'them' now.

For a few days it was nice to consider disability as 'insider' status. Ha, so there.

Last night, though, talking with friends all different and unique. Nothing dividing us but skin and air it was nice to envision a world of ...

Monday, February 19, 2007

It only made sense. We were directly south and could easily stop by to visit Phyl on our way home. Phyl, as I have mentioned in an earlier post, is a very dear and very old (literally) friend from our days living in Quebec. Over the last couple of years she has had health problems that have led to her being house-bound. Even so her spirits are always up and our calls to her always delightful. When living in Quebec we had a tradition of going for pizza together once a month and for a wee tiny, little old woman she could pack away pizza at a staggering rate.

We called and arranged to drop by around lunch, pizza in hand. She said that she'd be there waiting for us. We hadn't seen her for a couple of years so we prepared ourselves for the visit but arrived to find Phyl, Phyl. Her physical world had shrunk but her intellectual world was still broad. A long time listener to CBC radio she was up to date on world events and world politics. She still had a cutting wit. And like all old people she had a long history from which she could pull stories. A couple of new ones were slipped into the mix on this trip. It was good to see her.

But as we drove away I knew I'd be blogging about the visit but I didn't know which blog to write or how to really feel about our time together. So, I'm going to do a series of bloggettes (is that a word) to capture my visit and the resulting confusion.

One - Anger

Phyl spent almost all of her life as a member of a several communities but primarily of the church community. She never had children but she was Sunday School teacher to many in the church and was indeed one of the matriarchs of the church family. It was at church that we met Phyl and at the time marvelled at the way the church built community. We were proud to be part of that heritage.

Especially me. I have always believed in community. I have always believed that the community had heart and that the community was a place of bounteous blessing. We call our movement the 'community living' movement because we believe that all belong to the community and that the community belongs to all. Over the years I have come to doubt 'community' to doubt that there was a heart at the center of the city.

Today, my doubt was confirmed. After a lifetime of service to her community. Phyl is alone. She could not update us on the comings and goings of the church. No one visits her. No one calls. The minister has only dropped by once, years ago. She feels abandoned by the community that she had nurtured.

Phyl is a soft spoken woman, a woman for whom gentleness is second nature. But there was anger in her voice when talking about her isolation from the community that she had built. On our way out of town I couldn't even look up at the building that we had worshiped at for ten years. We drove by, silently.

Two - Pride

We had the pizza in Phyl's kitchen. Joe hauled my wheelchair up and Phyl moved her walker out of the way so that we could all gather around her table. As we ate her lovely cat, Lady, hopped up onto a cushion that was set for her on a TV table near the door. She watched us eat. She watched over Phyl. The whole place was set up for Phyl to be at home. She recounted to us the history of moving from hospital to hospital to hospital to home.

She was so glad to be at home. The sign on the door still says Fred and Phyl and there are memories of Fred all over the house. Though he's been gone many years now, oddly there was a sense that they still lived together in the home they made. She told us how she likes to sit in the front room with the sun streaming through the window and watch the comings and goings of the neighbourhood.

The tone of her voice shifted as she spoke of the people who came to care for her. Those who came in the morning, those who checked on her at night. Those who shovelled her drive and those who made sure she got her mail and her meds. She was so grateful to those people. Not just because they made it possible for her to be in her home, but because they were so kind to her. They called her, checked up on her, made sure she had both assistance and company. We are called care providers but we are not really paid to care, we are paid to show up, caring is at our own discretion.

She knows that she would not be able to be in her home with her cat and her memories of Fred without these people. But it's more than that. They have increased the quality of her life. When one community failed her another took over. True they are paid to serve, but serve they do. She feels their care. Is thankful for it.

It's nice to be reminded of the heritage that human services creates for itself and for those in care. It's nice to be reminded that we enrich the lives of those we serve as we enrich our own lives. It's a good way to live. A good way to make a living.

Three - Family

I am reminded of sitting in Grandma's kitchen when I'm with Phyl. I'm reminded of the simple times of sitting together just chatting, catching up. I'm reminded of the power of laughter and the power of simply loving someone else.

Fred and Phyl never had children. I've never asked why. I know they married late. Both believing that they'd live their lives alone. I know that they were surprised at their love and their life together. But that's all I know. I would never ask.

But Phyl knows that Joe and I feel strongly for her. That we call her on all the holidays and on random days in between because we want to, not because we have to. There is no word for what we are to each other - the closest is 'family'.

I hear so much about 'family values' - well, I value family too. Even if the family is related by heart rather than by blood. Our relationship is truly reciprocal because our relationship isn't required or beholden. She is family because I love her. I am family because she loves me.

I truly think it's that simple.

* * *

There, a visit to Phyl and my mind full of thoughts about her, about life and about community. In many ways she gives me such hope as she shuffles around her small world she reminds me that physical space does not need to confine us - our minds have the capacity to travel even when we no longer can. In many ways her life frightens me, the lack of responsibility that others feel for her - the smallness of the hearts of others to even drop by on a wonderful old woman - and I wonder how shallow the waters of community run. In many ways Phyl teaches me that love still embraces her - as she says grace over the pizza you know that she believes and that her faith, if not in others in God, has never deserted her. So she will never, really, be alone.

Sunday, February 18, 2007

We had just arrived at our favourite bar in Montreal. After a long drive a drink seemed in order. The bar was preparing for it's 10th anniversary party the next night and people were scurrying about with decorations. The guy using the helium tank to blow up balloons had been passing hellium bongs to everyone and the bar was filled with Minnie Mouse voices and drunken laughter.

Exactly the atmosphere we were looking for. I took a hit off a balloon and sounded like my privates had been caught in a vice. It struck me very very funny.

"No, really look at this." The balloon guy was awestruck and was gingerly taking off a balloon that didn't look quite right. He tied it and then showed it to the bartender who was clearly impressed. There was sudden interest in the balloon, I knew it would make it's way over to me so I just waited. Smiling, primarly because my privates hadn't been caught in a vice.

When the balloon was shown me I could immediately see what the fuss was about. A rhinestone kind of paste gem had become imbedded in the fabric of the balloon. It clearly wasn't supposed to be there and yet there it was. For the first time I considered balloon making as a trade and pictured a big factory where fun was manufactured and balloon makers jockeyed for space alongside rhinestone tiara makers. A simple slip of hand would have an errant stone marrying a newly minted balloon. And it was indeed beautiful.

Everyone thought so.

"Oh, pulleeease!" Columba never much thought me funny. At least she pretended not to with that kind of teenage indulgence for those so very much older. Even though I was barely out of my teens, one year out of university, I felt the adult she pretended I was. I took to her right away. I had been hired as a classroom assistant for students with physical disabilities. They were a fun group. I felt so much more aligned with them in the classroom politics than I ever did with the teacher. We were closer in age and closer in temperment and I had little understanding of the boundaries of my role.

Columba used a manual chair most of the time but on occasion would use one of the electric ones in the classroom when she needed to go very long distances. I would transfer her and as she trusted me more, and when the teacher was out of the room, I would toss her up into the air and then catch her and set her in the chair. She laughed. So did I.

What was remarkable about Columba was how beautiful she was. She had eyes that flashed, a laugh that tinkled and a killer fashion sense. Her physical disability kept her quite small but there was no question that she was a young woman. Emphasis on woman.

Once I had Columba and Wendy and a few others over for dinner and Columba brought a pasta maker and made home made pasta. We laughed until we cried. The food was incredible and Columba was a shrewish Italian woman ordering us all about the kitchen doing her bidding. She relished in the role.

But school was cruel to her. You could see her longing to just be one of the girls and do girlish things. But you could see the distance that the other kids kept from her. I never understood why. They were all just kids. And Columba had a personality that sparkled, genuinely sparkled. She was a diamond lost in a sea of plastic faces and made up personalities. No one saw her.

Years later I was told that she had died. I never knew the circumstances of her death but I had hoped that she had found at least a little of what she was looking for.

"Give it to me," the bartender said, asserting the right of 'behind the counter personnelle' and took the balloon. He found a bit of ribbon, tied one end to the balloon and the other end to the bar rail beside the register. Even from where I sat I could see the gem glinting in the dim bar light.

Saturday, February 17, 2007

I sat in my chair behind her as she had this long conversation with the poor clerk. As I far as I could figure she wanted something non-caffeinated ... and when she was shown the list of things that were non-caffeinated she looked confused and said, "But I want a coffee."

ohpleaseohpleaseohpleaseohpleaseohpleaseohplease

The clerk explained that these were coffees without caffeine. "Why are you trying to make me have decafeinated?" The clerk looked confused but eventually they settled on a coffee, with caffeine. Then she wanted to order a treat but she wasn't sure if she wanted the cinnamon bun or the cinnamon scone. It was impossible for her to decide if she wanted it heated or not.

And I steamed.

Hurry up. Just make the damn decision and hurry up.

I looked behind me, everyone was getting frustrated.

comeoncomeoncomeoncomeoncomeoncomeon

Then, then she asked if the coffee place across the street would be cheaper. The clerk said she didn't drink coffee there so she didn't know. Then she remembered that she'd been given a gift card, was it for Starbucks she wondered. It took 73 hours for her to find it in her purse and confirm that it was indeed for Starbucks. The clerk swiped the card while the old woman told her how her son had bought her the card for Christmas but she thought she'd never use it. Right then I hated her son, I hated her ability to reproduce. Come on!

enoughwiththechatenoughwiththechatenoughwiththechat

Then, then, then she had to decide what kind of milk she wanted in the coffee. Her doctor wanted her to cut back on the fat, but skim milk didn't taste like whole milk, did it? The line up behind me first grew and then people just started to leave.

hurryuphurryuphurryuphurryuphurryup

If she had any hearing at all she could have heard the frustration escaping me like a slow leak on a bike tire. But she didn't. Instead she just smiled at the clerk who busied about getting her order.

we'reallwaitingladywe'reallwaitingladywe'reallwaitinglady

Finally she was done.

In an instant I was at the counter.

I smiled and quickly ordered. Two teas. One green, one black.

I looked back at the line up hoping they noticed my crisp efficiency ordering. Maybe in a wheelchair but quick, decisive, a man to be reckoned with.

The clerk was getting my stuff and keeping an eye on the elderly lady as she made her way to a table. When she sat down she looked up at waved to the clerk who waved back.

I smiled, sweetly, and said, "How do you keep your patience?"

The clerk looked shocked then she smirked, "Well, I'm just a clerk so her taking a little bit of time doesn't frustrate me like it does all the really important people in the line up."

Friday, February 16, 2007

She's beautiful. We're all taken with her. A group of business men types having breakfast in a hotel lobby, it's nice to see a little kid doing little kid things. It's a distraction from eating for purpose, not pleasure, worrying about the day rather than simply enjoying the moment. Her mother was getting two plates from the buffet behind and bringing stuff back to the table.

Then it began.

Norman Rockwell began the painting but reality set it alight.

Mother started almost immediately. Kate, dew eyed child, was left handed. Mom was insisting she use her right. "You want to be perfect don't you?" Tears sprung to little eyes at the knowledge that at 6 she wasn't living up to expectations.

The room tensed. Everyone stopped for a second, like we'd all witnessed a slap across the face. Then, moment gone, we went on.

The child struggled to use a right hand that was no where near as adept at the left. But Kate wanted to make mother happy, be a perfect little girl. After only a little time she gave up on her food. Mother looked more approvingly at unfinished food than she did at her daughter.

Kate got up and began to check things out in the room. She came over to this computer, looked over the fake books in the fake bookshelf. Then back to the table. She was little. Really little. She lifted her arm up for mom to pick her up and help her into the chair.

Another sharp shot, "You don't need help, you aren't like that poor crippled girl in your class. You've got to learn to do things on your own."

The room tensed. In seconds we were all up, save Madonna and Child. I don't think that anyone could take it any longer.

I said nothing.

I told Donna, the woman from Rhode Island who brough me here and she said, voice full of irony, "And you need a license to fish in this state."

When I got back to the hotel, I had to wait for an hour for the computer. I kept calling down and finally the station was free.

She's here now.

Kate, the little girl.

She's colouring at the table behind me. I don't know where mother is. It looks as if she's being watched over by the woman on the desk.

Thursday, February 15, 2007

Years ago when I became a consultant the job, though challenging wasn't particularly interesting. I'll swap you one aggressive guy for three non-compliants and a bedwetter. Really. Important stuff but not 'gripping'.

Now, I've just finished a day of consultation north of Toronto and a day of consultation in Rhode Island and man the questions get harder and harder. People talk about situations, people, personalities, ethics ... all at once. Suddenly the stories I hear about people with disabilities are incredibly convoluted. Their relationships have become complex with confused motivations. Just like real people. I can only follow along because I have a mind that remembers the twists and turns of a soap opera plot line. The Young and the Restless is the perfect tool for keeping your memory sharp.

But the discussion are not so much about stopping someone but helping someone - many agencies have truly begun the growth process. They've started supporting these people who have real lives, messy relationships, confusing loyalties, mixed up priorities. At no point in province or state did anyone want to overstep their bounds, they wanted to keep safe without jailing in the prision of protection. They asked really hard questions.

What happened to people with disabilities who just did what they were told?

What happened to the days when non-compliance was met with compliance training?

What happened to 'can I have an extra chocolate bar and when did it metomorph into 'give me money from petty cash for a hooker.'

Was I off the day that someone decided that people with disabilities ... if they wanted messy real lives they were welcome to them?

At the end of each day I was exhausted. Really tired. I'd thunk and thunk until I could thunk no more. We all talked and thought and cared and worried and planned and hoped and did everything we could to ensure that what we did helped, that what we did we did for the right reasons, that what we did would be good care not just good service.

Ain't it awesome that the job is finally the right kind of difficult ... difficult to figure rather than the wrong kind of difficult ... dificult to control.

Wednesday, February 14, 2007

This question is a routine part of my self advocate workshops - it's part a discussion about feelings. I'd asked the question two days before Valentines Day and I should have been prepared for the answer.

"Valentine's Day"

"Having a boyfriend."

"Having a girlfriend."

"Chocolate hearts."

"Getting married."

One after another they called out answers. One woman explained, slowly and clearly that she had a boyfriend and that he hadn't come that day but she loved him. He made her happy. Even when he wasn't there - she could think about him and he made her happy.

I joked with them a bit about how Rhode Islanders are obsessed with love and sex and relationships - they laughed but didn't contradict me.

I remember back only a few years ago a man with a disability sitting in my office. He had been brought to me because he wanted to ask a question about sex and he refused to ask his staff. They finally called and said that he just wanted to ask a question.

"Sure."

He came in and sat waiting to see me.

When he came in it took him a lot of courage to work up to ask me his question. I expected something serious, something deep. Because he'd started to cry even before the words came out.Cry.

Really Cry.

Then came the question spoken through tears. Asked by eyes that couldn't look at mine.

"Do you think it's OK for me to love?"

He only then looked at me, fearful of my answer. I knew without him telling me that he'd been told 'no' by many, for a long time, and that his heart had started to believe that he was not worth love, worthy of love, capable of love.

I was careful.

"Yes." I said. I started crying myself.

"But others will tell you that it's not ok. Others might try to stop you from loving. But, of course, it's Ok to love."

He held his face in his hands and cried. Wept with relief.

Then he looked at me and asked quietly, "Will you tell him?"

"Tell who?"

"Him, God."

"What!?!" I asked - shocked.

"Mom told me that God didn't want me to have a girlfriend. To have sex. Will you tell God that you think it's OK?"

I was shaken. I had to think. Too many emotions. I'd been told the same. For different reasons - but I'd been told the same. What to do? What to do? What to do?

There was only one thing to do.

I said, "We'll tell him together."

I took his hand and we bowed our heads. We sat in silence and then he whispered, "You go first."

So I prayed asking God to bless this man, to give him the opportunity to fall in love and be loved. And I asked God to continue to bless me and the relationship that I had. To bless love. The lovers. The loving.

Then he prayed, "God, I love You. I love my mom. So I know my heart works. Can you let it love someone else too?"

We sat quiet. Then he said, "Thank you."

I'm not sure who he thanked. I'm not sure it mattered.

I thought of him as I listened to these youngsters talk about boyfriends and chocolate hearts.

Tuesday, February 13, 2007

She arrived with her staff and they bustled about getting registered, getting ready. The staff, a lovely and seemingly gentle woman, pointed to a chair second row back third in saying, "This looks like a good seat." Maya, a woman with Down Syndrome, smiled and took her seat. The staff said goodbye and left. The workshop is for people with disabilities and staff or other care providers cannot attend.

Soon others began to arrive. We were meeting in Rhode Island for a workshop for people with disabilities on abuse prevetion and speaking up. Two women came in and all their actions were frenetic yet slowly paced. They conferred about everything. Finally settling on two seats off to the side they stopped, remembered who they were in the world, and looked at me to ask, "Is it OK for us to sit here?"

I'll never get used to this kind of permission asking. Never in a workshop for non-disabled participants have I been asked permission to sit.

But, I smiled and said, "You can sit where ever you want. It's your choice." They nodded a 'thanks' and then sat.

Maya stared at me, incredulous.

I didn't know why.

Yet.

Others came in and several times I had to say, "You can sit where ever you want, it's your choice." Sometimes I really had to assure them, "Really, it's ok choose wherever you want."

Finally Maya looked at me with challenge in her voice and said, "You can really sit where ever you want?"

"Yes."

She sat for about two minutes more and then with purpose and determination on her face she stood up. She spoke outloud, talking to herself, "You like to sit up front. You can see better. You don't want to be at the back," then (and it's a beautiful then) she moved one seat over and sat.

Plopped down. Looked at me and grinned.

She was in her seat. The one she picked. The one not pointed to by staff. The one she decided on.

A tiny act of rebellion. A tiny act of assertion. A tiny act of independence.

And because of that tiny act the entire state of Rhode Island is just a little bit freer.

Monday, February 12, 2007

Joe and I had finished in Sudbury but the weather was so bad that we couldn't make it back home. It was Friday, we'd been away for almost two weeks, and we wanted to go home. It was a bit depressing having to stay. But we consoled ourselves by going to the big mall there to do some shopping.

At one of those booths set up in the mall itself an older guy was selling a mish-mash of stuff. A big sign said, "We sell diabetic socks!!" I pulled over and asked him what diabetic socks were and he joked, "They're sugar free." Then he went into this passionate sales pitch for these socks. He showed how they were loose but didn't slip that they were comfortable and didn't restrict circulation in any way. Man this guy was into those socks. I nodded. Tried three times to get away. Finally said, "Well we'll do our other shopping and stop on the way out."

We fled.

As we shopped I started to think about diabetic socks. I was honest with myself. Sometimes my socks hurt. I have those pinpricky feelings in my feet that has a very long name that is common to diabetics. Hmmm, I mused.

At first, and I don't know why, I decided never ever to tell anyone that I was wearing diabetic socks. It somehow embarassed me in ways that the wheelchair never has. They were a symbol of something - negative - in my mind. So I was going to wear my diabetic socks in the closet.

Until today.

Joe asked me this morning how I liked my diabetic socks.

I told him, truthfully, that I loved them. That I'd never wear anything else. They don't hurt, they are comfortable and if you squint they are somewhat fashionable.

Sunday, February 11, 2007

"What did you drop now?" Joe's voice was exasperated. For years now as my mobility slowly decreased when something hit the floor it was out of my world and into his. It's not fair. But life isn't.

"The house key."

I haven't had a key ring for years. I have only one key. To the house. I keep it in the change compartment of my wallet. Or what used to be my change compartment but is now a zipperless lifeless flap. In the last couple of weeks everything that goes in comes out. Immediately.

"When are you going to replace that wallet? You've got a new one, you know the one you got for Christmas."

My chest clenched. The new wallet isn't my wallet. It's all firm and toned - it's everything I'm not. I love my wallet. I know that the credit card slots are all ripped and the inside silk has been gone for years. It's worn and torn and well used.

"Yeah, yeah, I know."

I do know. I should replace my wallet. But I'd lose the sticker. Years ago I did a presentation at 5 Oaks for the KW Habitiation folks and they gave out a gift bag and in it was a sticker for a radio station. The sticker had the station name, DAVE, and its number. I cut off the number and stuck the sticker on my wallet. I like that sticker. I like the KW Hab folks. I like my wallet. It doesn't just carry cash, it carries memories.

"It's not you who has to constantly pick stuff up."

He's right. But I like my wallet. It's got life left in it. True there isn't a seam that isn't torn somewhere on it's length, but you don't throw away wallets for something like that. This wallet has travelled all over the world with me. I really really really like my wallet. Really.

"Yeah, I know, I'll get to it this week."

This of course is code for, "please drop the subject and please pick up my key."

"Sure you will."

Years ago when working with a guy with a disability we tried and tried and tried to get him to throw out stuff that was useless, long past it's due date. That guy was my age now. He refused. Wouldn't listen to reason. We programmed him and prodded him and he wouldn't give it up.

I still don't understand him. Why would I consider him at all like me?

Saturday, February 10, 2007

Summer jobs. An odd thing to think about with subzero temperatures and snow squall warnings. But I thought of one of my summer jobs today. Probably because I slipped an fell on my way out of the car and into the house. I hit a slick patch and in an instant I was down.

Later, sitting on the couch rubbing my hip, I realized that falling is a state of transition - a fluid state - a state with a definate beginning and a definate end. Falling was like life.

Wheeeeeeeee - thud.

You're done. Cooked.

Death. It's headed for me at breakneck speed.

You too.

Then I thought of a summer job I had in Trail, British Columbia. I was working with "emotionally disturbed" children. That was the label. But what they were was something different. Unloved kids. Unbright kids. Unwanted, unsuccessful, unlikely to succeed. What a mob. They resented being together - being seen with one another - but the escape from boredom into activity was too big of a draw.

I got to like them. They were actually kind of fun. And beyond the bravado, cool. Once I stopped being afraid of them - expecting failure - summer started to be fun.

What surprised me is that one by one, they talked to me. I had no healing agenda, the Mental Health Clinic just wanted activities for these problem kids. I was to provide those activities. And I did. Planned them, organized them, got help when needed - did it all. I don't remember the exact number of kids but there were 8 or 9. To one. Me.

One day I had arranged for a trip to a horse ranch where they were going to go on a trail ride. I'd cleared with the ranch who the kids were and who I was. No way I was going to put my butt into a saddle. I'd bring them, wait for them, take them home. During the hour that they'd be on the horses I would organize a couple details for upcoming activities.

But a problem occurred. One of the kids, Bryne, had never seen a horse up close. He was terrified. He didn't want to show it, he didn't want the other boys to know that he was afraid, couldn't let his guard down. But I saw it - luckily before they did.

"Swear at me," I whispered to him.

He looked at me, shocked at the request.

"Come on swear at me," suddenly he understood.

"You fat asshole, why the fuck did you bring us up here with these stupid fucking cowboys?"

I turned to the head horse guy - who had gone ashen and looked like he wanted to hang Bryne high, and said, "This one will stay here with me."

Then I turned to the kid, "Get your butt over to the car and wait there." He marched to the car muttering and cursing under his breath.

When they were all gone I got him out of the car, got my lunch bucket out of the trunk and we sat on a couple of large rocks and looked out over the ranch.

"Thanks," he said. I thought he was going to cry.

"When I told you to swear at me, I didn't expect you to be so good at it."

He grinned, "Sorry."

So we talked. First he wanted to know if I thought he was 'sissy' for not wanting to ride the horse. Nope. Did it mean he was weak. Nope. That he wasn't a man like the rest of them. Nope.

That done. We talked.

In that moment, I knew he trusted me. He told me that one day he wanted to fly in a plane. That it must be so cool to be so high that you can see the whole world. I'd been on many a plane by then and didn't tell him about the small windows and the uncomfortable seats. Instead I told him about the first time that I saw a cloud from overhead. About what it looked like - how it made me feel. His eyes glistened.

"Well, I hope I get to ride in a plane before I die," he said. A 10 year old talking about his demise worried that life wouldn't grant him his wish. A 10 year old used to life not granting wishes. A 10 year old who only had a tiny bit of hope left - having used up most of it just to get this far.

And today, years later, I wondered. That poor kid, from a life of poverty, did he take that plane ride?

I sat on the couch and it really mattered to me at that moment. It really mattered to me that that kid with the big wet eyes, the tiny shoulders with the big chip on them, the swagger that didn't quite work - it mattered to me that he got on a plane and saw a cloud from the other side. But I'll never know.

This week I got an email from a woman I work with. She wrote to me about a man who had a special event planned for a significant birthday. A dream and a wish that he'd had for years. It had been promised to him - and suddenly because of someone's concern, someone's interfering disagreement, it looked like it wasn't going to happen.

With a passion that sprang from a source I didn't understand, I emailed back. A flurry of email's later, it was going to happen.

Friday, February 09, 2007

I love, love, the remote control. I love the sensuous way it fits into my hand. I love the feeling of power it gives me. And I love the connect between the eye and the finger that makes it possible to judge a show in a half second. But I also love how the flicker sometimes pauses, when you are distracted, on an odd station. And there are some really odd stations.

Interupted from 'flipping' by the phone, I landed on a fishing show. They have shows about fishing. Hook, line and sinker, fishing. Wow. Who knew? Everyone on the show wore hip waders and they talked very intently about ... fishing. There was this guy on the programme and he was talking about fishing strategy. Outsmarting a fish. Tricking a trout. Fooling a flounder. My attention became rivetted. He said that "you gotta upsize your bait". The guy he was talking to looked dumbstruck - like Moses looking at the burning bush.

"You gotta upsize your bait."

I knew immediately what he was talking about.

A friend of mine growing bald and pudgy had bought a really expensive, really little car. He was upsizing the bait.

My dog used to whine and be annoying sometimes but when that didn't work, he switched tactics he looked up at me with adorable doggy eyes - the little bugger just upsized the bait.

I watched in fascination as a female friend of mine put herself together to go out to a conference get together -it took her forever, and she stressed over everything from earrings to pantihose - but now I realize she was upsizing the bait.

This philosophy has worked for people with disabilities too. I remember working with a mom who desperately wanted help motivating her child to use a spoon. I watched as the kid grew frustrated as peas kept falling out of the spoon. Peas!! I said, 'hold on' left her home went to the grocery store and came back. "Let's try again," I said pulling chocolate pudding out of the bag. That kid's motivation skyrocketed. Why? Peas to pudding. I upsized the bait.

It works. I didn't know what to call it then, but I knew it worked.

Today I was reading in a report about some guy moving back from the institution to the community. He's fearful of the move, grown comfortable with captivity. It struck me, 'we gotta upsize the bait'. We can't just show him a picture of a home - a room of your own is a mass of responsibilities - vacuuming, cleaning, bedmaking - all of which is done for him now. We gotta show him the colour of the community, the flavour of neighbourhoods, man, we've got to advertize, to hell with Febreeze, give him a whiff of freedom. Upsize the bait.

It's not as if we don't have the goods.

The community is amazing. Yeah, it's daunting, but it's amazing. Given the small lives that so many lived in institutions - it ain't difficult to upsize (say it with me) the bait.

I'm going to suggest we get together and figure out what he likes, looks forward to, dreams about.

Then we've gotta, wait for it ... 'upsize the bait'.

A fishing show - who'd have thought that the water would be that deep?

It's a trick word, it allows me to oppress you for years and then when I get tired from holding you down and decide to let you up on your knees I can sound like I'm munificient because I'm releasing the grip a bit.

Empower is only a word an oppressor can use.

Taking courses in counselling and looking at the dynamics of power, one thing was made quite clear to me, my job is not, ever, to empower anyone. I am not God - I can't gift power. My job is to help people discover the power they've had all along, and then help them learn to use it. Power come from taking breath.

We do not give people with disability a voice. They've always had it. Choosing to listen is a choice that the powerful make. But the voice is not our gift, God did that.

We do not give people with disabilities rights. They've always had them. Choosing to respect those rights is a choice that the powerful make. But rights are not our gift, citizenship did that.

We do not give people with disabilities power. They've always had it. Choosing to allow power to be used is a choice that the powerful make. But power is not our gift, life did that.

Why do we always want to see ourselves as liberators, when the liberation needed is from the liberators.

Empower.

Try it on for size yourself. Imagine your boss says, "I empowered you to succeed" or your spouse says, "I'm proud that I empowered you to make dinner". Don't you feel like putting your fist through the computer screen.

Arrrgh.

Empower.

Nails on a chalkboard.

Empower.

Always said with self concious self satisfaction.

Empower.

It's a word about me - not about you.

Empower.

Never enough to challenge us, but enough to require gratitude, a 'thank you'.

Wednesday, February 07, 2007

Several years ago I did a workshop down in the Essex area for people with disabilities. We'd had a lot of fun and I'd hope that a lot of learning had happened. As I was busying myself getting ready to go I noticed a woman who had not moved from her chair. I knew, from the workshop, that she was blind and her white cane sat folded up in her lap. At first I thought she was just waiting for staff or family, but no one came.

I asked as I finished loading the briefcase, "Are you waiting for someone?"

"I was just waiting to ask you a question," she said quietly.

As this was a workshop on abuse, I prepared myself. "Yes."

"You are good with words, I like the stories you told," she said and I thanked her for the compliment.

"So, you wanted to ask me a question," I reminded her.

"Yes," she paused like she was trying to find the words, "I don't mind being blind but I've always wondered something."

"What's that?" I asked growing more curious.

"What does blue look like, the colour blue, what does it look like?"

I was stumped. Everything I thought of to say didn't work, saying, "It looks like the sky, the ocean, cornflower ..." only works if you've seen a sky, an ocean, a cornflower.

"It looks happy," doesn't work when people get blue when they are sad.

All I could say is that was that blue was like the scent of vanilla - it smells one way in the jar, another in a cake, another in perfume, another in a candle, another in soap ... blue looks different and feels different almost every time you see it.

She was disappointed that I hadn't been able to help her. I could not, for the life of me describe the colour blue. I've thought of her often over the years. Every time I land at an airport at night and see the remarkable blue cobalt lights, I think of her. Sometimes when the sky is that white blue of crisp days, I think of her. Sometimes when I see the gentle blue of my favourite towel, I think of her.

And I thought of her again today.

Ruby, Mike and Merissa's daughter has a cousin that went into the hospital for something routine and something exceptional happened.

Mike's voice was shaky on the phone when we talked, "They called a 'Code Blue' three times today."

I've seen blue as happy and sad, I've seen blue as gentle and joyous, I've seen blue as homesick and lovesick, but today I understood blue in a new way - terror. As I prayed for the baby I added a new entry under the colour 'blue' in my mental dictionary. And I thought of her sitting there waiting for me to answer.

But I still don't know what I'd say to her, even after years of thought. I once started a letter to her saying, "The colour blue looks like ..." and that's as far as I got.

I'm not a poet.

Some days I'm barely a writer.

But I don't know what the colour blue looks like.

But I think I should have said that the colour blue doesn't matter when it can't be seen. I should have asked her what vanilla smelled like when you couldn't see the cake. What sun felt like when you couldn't see the light. What love sounded like when you couldn't see the smile.

Tuesday, February 06, 2007

This morning I met with a young student about to start with a placement at Vita, this afternoon two new supervisors were introduced to me as part of their orientation. They were all so young. Kids. Taking on such huge responsibilities. You could see the enthusiasm in their eyes, it was ... sorry ... cute. For an old timer like me, I see these kids and remember my first days. Yes, we all come to this field for different personal reasons, but I think we all come carrying the gift of ourselves and the desire to truly make a difference.

I remembered back many years ago when I was asked to contribute to a staff manual - the author had asked 'community living leaders' to write advice to people just entering the field. The book, when published, was quite interesting. I enjoyed reading what others had said, and even though I contributed as a 'leader' I felt that I learned. This old dog could learn new tricks.

So when I got home I dug around for the book with an idea of taking it into work to share with these newbies. I couldn't find it anywhere. I did find an old yellowed copy of what I wrote and man, did I miss the mark or what. I think I was so stunned at being asked to write something as a 'leader' that I tried too much to be leader-ly and profound, as a result what I wrote was stilted and stiff.

I want another shot at the task. I've decided to approach it like the idea from the blog 'three beautiful things' that Belinda introduced me to some while back. Here's three bits of advice for the young who wish to serve ...

1) Keep your passion on purpose not politics. Remember always why you came into the field. You will be pulled from pillar to post as the vortex of the workplace tries to distract you into interpersonal feuds and petty politics. Nothing burns you out more than kindergarden spats with co-workers. Figure out just what your passion in service is ... focus your energy there - separate the wheat from the chaff. I spent far to much energy in the early days of this career getting involved in what didn't matter and losing focus on what did. I saw people burn out, not because of the job of service but because of burned bridges and bitter relationships. Keep your eyes on the prize - we get to be in the life histories of those in our care - cool.

2) Keep your boundaries clear. This is your job. These are the people in your care. We are not parents, we are not friends, we are not family - we care because we choose to, we care because it matters and we care until the end of shift. Give yourself a break, every day, from the demands that arise from being needed. Remember that you, too, must have a full and rich life. Work is only part of that life. I remember having a long talk with Marsha Forest years ago and we talked about how it was to 'rise to purpose' every morning and about the demands made on our time, our hearts and our minds. I wrote to her that in my heart I have a little garden that is just mine, I go there when I need peace and rest. I have a little sign on my garden -- it says -- "Take Note - This Is My Frigging Garden Keep Your Ass Out". We all need that garden. We all need a place to replenish ourselves and where we can reflect and grow - tulips and character.

3) Keep your sense of humour. If you can't laugh, you ain't going to make it. You are going to see bizarre behaviour - hear bizarre tales - listen to bizarre professionals talking bizarre talk. Laugh. I remember listening to a psychologist tell us that in order to stop a guy from eating feces we were to put katsup on the feces (to change the sensual experience, he said) I asked him if we were to offer "fries with that shit" and we all laughed. Well he didn't. (By the by, I didn't make that example up.) I know I'm approaching burn out when I don't laugh about work any more. When I don't laugh at work any more. When I don't laugh. Keep giggling. If it's funny laugh. Simple rule, profound results.

There. I could do many more but I'll stick with these. However, I feel unfinish. Like there's something more I want to say. So, I'll offer three insights ...

1) Examine. You are in relationship to an often powerless people. You are offered the power to programme, the power to interpret their lives. Power corrupts. Spend time examining your heart and your mind. Make sure that you don't become addicted to power. Make sure that you see you for you - see your errors -see your successes -see your journey too.

2) Forgive. Mistakes will happen, you will have regrets learn to forgive yourself. Be a harsh taskmasker demand that error always leads to growth and to a vow to not repeat the hurt. You will need to forgive yourself. You will need to learn to ask pardon of those with disabilities that suffered your mistake. You will need to learn to receive forgiveness from yourself and others.

Monday, February 05, 2007

I didn't murder anyone today. Nor did I roast my neighbours over an open pit and have them for bar-b-que. I didn't rob, or swindle, or cheat anyone today. Mustn't have been in the mood. Timing mustn't have been right. Something was a bit off.

You know, I know I shouldn't listen in to other people's conversations, but I do. We were in a mall food court - I go there because they have a Pita Pit and I love falafel pitas. It's messy eating but that's part of the fun, the challenge - you have your sports, I have mine. Across from us were two middle aged ladies chatting while one of their husbands looked around the court distractedly.

They were talking about Jeffery Dahmer. One of them had seen a program on good ol' Jeff on television and she was saying, "When I saw his picture in the paper I just couldn't believe he'd do such a thing, he's such a nice looking boy." Yeah, right, pretty people don't sin - that's left to us butt ugly folks. Then, then, then, the other one said, "And Karla Homolka was a pretty girl too, I just don't understand. She and Paul just looked so normal." Understand - evil is evil. It only means 'evil' it doesn't mean 'ugly' it doesn't mean 'fat' it doesn't mean 'disabled,' 'deformed,' 'crippled,' it just means 'evil'.

In a society obsessed with beauty, imperfection becomes sin and sin becomes evil and stereotypes abound about the 'different'. People don't want disabled people in the neighbourhood, they 'fear for the safety of their children' - yeah and the same people who would fight a home for people with disabilities opening next door probably brought your basic next door neighbour serial rapist-murderers, Paul and Karla a cake when they moved in. "Such an handsome couple."

OK, so the conversation upset me - it made me channel my inner Vader (Darth being one of celluloids ultimate disabled villians). I wanted to jump into their chat but I didn't. Joe gave me one of those 'don't' looks of his and I went back to my falafel. It was just hard swallowing with a lump lodged in my craw.

But even upset, I didn't take my plastic utensils and carve up Betty and Wilma or whoever they were. I'll stick to words.

Sunday, February 04, 2007

Last week I was in Frankenmuth giving a one day workshop to teachers and Friday I was in Sudbury giving a workshop to teacher's assistants. Each day went fine, I suppose, but on the drive home today it hit me. Damn. Blast. I didn't say, "thanks".

A few years ago I did a self advocate workshop in a small town here in Ontario. The group that came together was odd. Half of them were all adults well over 40, half of them were kids from the school all under twenty. We met in a tumble down Legion hall with walls painted with nicotene and the tables - like the members I imagined - were on their last legs. But despite the smell of stale smoke and beer we gathered as a group.

During the workshop I have people with disabilities come to the front to read each of the points on my flip chart. As they come up, we applaud, when they finish, we applaud. As I asked for the first volunteer to come up I looked over the group. They had clearly separated themselves by age, the old folks looking warily at the youth, the youth looking distainfully at their elders - predictable and normal. But age was not the only distinction.

Community - Institution

Always free - Mostly Caged

Expectation - Resignation

and, of course, like all old and young -

Excited - Tired

But there was something else. Something that I didn't notice until Joe brought it up at break. "Have you noticed," he asked, "all the kids can read and none of the adults can." He was right. I hadn't noticed. Sure I'd seen that it was only the kids that volunteered but I had assumed (never do that) that the adults were just letting the kids go up. After break, I watched, sure enough I could see that the older guys wanted to come up but they couldn't. They'd been passed over, thought unable they weren't taught.

I wonder what they thought, those older folks, when they saw the youngsters get up and read. I wonder if they realized what had been denied them. I wonder if a small part of them was angry, jealous, at the opportunties that had been given to kids borne into eductation.

What a fight it was, do you remember, for the right of kids with disabilities to recieve a real education. Flowing kids with disabilities from the tributaries of bias into the mainstream of expectaions was not easy - but by gum it mattered. Those kids could get up in front of a group of people and read. With confidence. With understanding. With comprehension.

It was such a huge moment for me. To see that community mattered, really mattered.

And I forgot to say 'thanks'.

Those teachers, those aides, those people who made it possible for school to happen. For kids to learn. For a new generation to have new skills.

Yeah. Yeah. Yeah.

I know the problems with schools, the difficult fights parents have and had, the constant battles with archaic systems and disphobic personelle.

Saturday, February 03, 2007

I was looking something up on Wikipedia and found an entry on John Money. That was how I learned of his death. I'm not sure why no one contacted me, I'm not sure why I didn't know, but the shock of his death sent me reeling. I had studied his work long before I met him having read him in University. Over coffee a friend asked me if I wanted to come and hear her uncle lecture at OISE in Toronto, I agreed not even knowing what the lecture was about.

Her uncle was John. Money. The famous sexologist.

I was blown away by the lecture by his brilliant frankness and his need to speak his mind and the truth as he saw it. Invited to meet him for lunch, Joe and I both jumped at the chance. Several lunches or brunches later he was talking about a person that he was counselling through the mail (!) and about the thousands of pages of letters that he had accumulated that documented this young man's life and his drift into a form of depravity. I said, that would make a wonderful book, John just smiled and said that the reading, collating and organizing of the material was just too daunting.

The next time we met John said, "I've found someone to work with me on that book you and I talked about last time." I was pleased and asked who he had got to do all that work.

"You," he said.

That began the journey that lead to the book, "The Breathless Orgasm". During the time we worked on the book I felt like I was in an intensive study course. John wanted to teach me how to 'think,' how to reason. He wanted me to understand deviance in a new and different way. I remember working on a passage of text and John spending over an hour on the phone with me coaxing me to find the error I had made. He wouldn't tell me, I had to find it, understand it and fix it. He was a hard taskmaster - but he was never harsh.

We talked occasionally over the years and I loved getting letters from him that were sent on used envelopes with stamps over stamps. I trusted him to show him some of my early work and he respected me enough to be honest and direct. He was a fine teacher. He knew when to be gentle, he knew when to push and he knew when and how to kick laziness up the backside.

In later years his career came under fire and some of his ideas attacked. This is the fate of those who think creatively and those who cut a path. I'm often asked what I 'think of the Great John Money now" and I think the same as I did before - I'm sure he made mistakes, big ones even, but I also think that he made mistakes not because of arrogance but because with trial and error comes, um, error. It's tragic that some were seriously hurt because of those errors. I know from knowing him that hurt was never his intention. It wasn't like he could look things up in a book, those books had yet to be written. So, the man I sometimes read about in newspaper articles wasn't the man that I knew. And loved.

There are hundreds, maybe thousands, maybe more, who John's work touched personally. I know the impact that he had on me. I owe him a debt of gratitude that a mere blog posting will never repay. I owe him a good chunk of my self esteem, a good chunk of my skill at 'seeing' a clinical situation and I owe him a thousand and one good memories.

Friday, February 02, 2007

We had been talking about "Ashley's Treatment" and she had been going on and on and on about it. I agreed, because of course, I agree. I think what happened is an abomination. Adulthood is not a disease that needs to be medicated away. But she kept going on and on and on. A thought that had been vaguely forming in my head came together and once I 'got it' I said it, "Don't you think you are being a tad hypocritical?"

She was stunned.

"Whatever do you mean?"

"Well," said I protecting my groin as I spoke, "it's not like your agency doesn't do psychologically what that family did medically. You don't do sex education, you don't allow people with disabilities to be alone together in private, you don't have a policy that allows people with disabilities to be fully adult and make adult decisions. So, it seems to me that Ashley medicated would be happier in your agency than Ashley, free."

She was spitting angry.

But, I'm sorry, it's not OK to disallow adulthood for those with disabilities. It's not OK to do it surgically and it's not OK to do it psychologically. It's not OK to use our power as service providers to keep people with disabilities as perpetual children. We're supposed to support growth not impede it. We believe what we believe or we don't.

I know that the situation with Ashley is not completely analagous - given her level of disability - but if it's not analagous it is certainly instructive. Ashley has offered us a chance to reframe our practices because when clinical practices in the real world look barbaric in the medical world - a problem exists.

A while back I published an article that I wrote with Susan Tough that said (I'm paraphrasing) "Any agency or family that disallows the natural growth and development of people with disabilities - including sexual development - commits acts of violence against the disabled every day." I said it. I believe it.

Because people are in care does not mean that we should be given complete power over their lives.

So, we who oppose Ashley's Treatment need to put up or shut up.

I have assisted many agencies as they have changed from sex negative to sex positive stances. I have seen agencies grow as they developed welcoming policies and healthy practice. I know it's possible to support people with disabilities to grow into thier own destinies.

It's why I got into this biz.

So she's spitting mad.

I'm probably never going to be asked back.

That's OK.

Because what's wrong, is wrong - no matter who does it, no matter how they do it, no matter what excuses they use to justify it.

Thursday, February 01, 2007

He walked up to me with real purpose and asked, "Are you going to talk about sex?" I explained to him that the workshop I was doing that day for people with disabilities was about rights and that I wasn't going to be talking about sex. "They told me that you talked about sex," he said, adamant. I explained that I did talk about sex (some would say that's all I talk about) but that I talked about other things too - and that day I was going to talk about rights. He looked disappointed, almost crushed and took a seat.

During the presentation he just sat there looking forlorne. He wasn't rude. He just didn't participate and didn't get into what I was doing. I felt sad that he had come with a purpose and I wasn't meeting it. At break he came to talk to me. "Can I talk to you about sex now?" he asked. I had fifteen minutes and thought, "How long can 'sperm, egg and condom' take?" So I said, "Sure."

"How do you know when your girlfriend is ready for sex?"

I had fifteen minutes.

He looked at me expectantly.

Fifteen minutes.

So I tried. I talked to him about love and intimacy. I talked about communication and really, really listening to what the other person is saying, not just with words but with their eyes and their bodies. I talked about not rushing. He looked at me as if I was making sense, not making it up as I went along. We had gone for twenty minutes and I really had to get back to it.

He was back at lunch.

"So how do you know when it's love?"

I didn't have it in me to hate this kid but I was beginning to.

We talked a bit and I asked him if he'd talked about these things with his mother. He shook his head and said that she told him not to worry about these things. I tried again, what about with his father. His eyes widened as if I'd asked him to stick his head in a lions mouth ... and then he looked at me as if I came from another planet where kids talked to their parents about these things.

I was having the "Gosh, I'm proud of you" moment that his parents should have had. This kid was deep and kind and careful. He didn't want to know about safe sex, he wanted to know about safe loving. His questions showed that they'd done a good job. They'd taught him morals and values. He wanted to be careful with his girlfriends heart. He wanted to care for her. He wanted to be careful with himself. He was a beautiful kid.

What's the most important thing you will ever teach your child about sex?

No, don't be lazy, don't just go on reading. Guess.

Did you guess ... safety ... important but not the most important thing you'll teach.

Disease prevention ... important but not the most important thing you'll teach.

Pregnancy ... important but not the most important thing you'll teach.

The most important thing you will ever teach your child about sex is that they can talk to you about it. That they can ask question and get answers, that they will get facts (not just opinions), that there is somewhere in the world that is safe to turn to for information.

Disability Pride

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Dedication

This blog is dedicated, in part, to Neuengamme prisoner 28631.

About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.